Reflections of a Newcomer to the Rare Disease Advocacy Community

2015 has been a year of whirlwind change for me, personally and professionally. I moved to a new home, said “I Do” to my husband and happily began a new professional journey on Genzyme’s patient advocacy team. Certainly, it’s been a lot to undertake in one year, but in the midst of all of these changes I’ve been fortunate to rely on the experience of trusted advisors to guide me down the right path.

When finding a new place to live, it was a knowledgeable realtor. When preparing for marriage, it was my parents. Professionally, I have first-hand experience as a patient advocate in the oncology community; however, six months into this new role I am realizing that many of my mentors during this transition have been you – the network of leaders who have long guided the rare disease space.

As a newcomer to the rare disease advocacy community, allow me to simply say “thank you” -- and by this I mean:

For welcoming me earnestly and with enthusiasm for our new relationship

For patience when I ask questions you’ve probably heard (and answered) before

For teaching me about your history, the leaders who paved the way and the struggles and triumphs that brought us to now

For connecting me with your colleagues and constituents

For guidance built from hard-earned experience and offered in the most thoughtful of ways

For sharing your experiences so that I can appreciate, even in part, the challenges overcome daily

For honesty and optimism about the work that lies ahead

Know that your time and your trust are not taken for granted. I am honored to be a part of this team and excited to meet and work with you. In the meantime, please feel free to reach out at anytime with news, suggestions, opinions, introductions, tips or questions at any time – I’m eager to learn.